CHICAGO — Scott Kramer was a haircut-every-two-weeks guy.
But with Illinois under stay-at-home orders and barbershops closed and his hair growing unrulier by the day, Kramer had to take matters into his own hands with a clipper set ordered from Amazon.
“I told Pammy I’m either going for Tom Hanks in ‘Cast Away,’ or I’m going for Tom Hanks in ‘Forrest Gump,’” he joked.
Pammy is Scott’s wife. They live in Chicago’s Lakeview neighborhood with their daughter Lily, a “Frozen”-loving 3-year-old whose older sister, Maddie, died from a rare, cancerous tumor in her spinal cord.
Lily was 2 months old when Maddie was diagnosed in April 2017. Maddie died in January 2018 at age 3 ½.
That fall, nine months after losing their firstborn child, the Kramers started a foundation called Dancing While Cancering to provide hospitals with backpacks full of room decorations and musical instruments and other little joy-spreaders for families whose children are diagnosed with cancer.
As soon as her cancer was discovered, Maddie underwent emergency surgery to remove the tumor, which was inside her spinal cord. Doctors told the Kramers she might not survive the surgery and, if she did survive, she might never walk again. Two weeks after surgery, she was running and jumping and dancing — hence, their foundation’s name.
She underwent intensive chemotherapy after the surgery and lived many of her days in the hospital.
“Our commitment during Maddie’s treatment was to keep Maddie as Maddie,” Scott Kramer said. “So we slowly but surely started decorating her room with paper disco balls on the curtain hooks and books on the bookshelves and toys sprinkled everywhere.”
Now the bright green backpacks, which they call “smile packs,” are a nod to Maddie’s cheerful, indomitable spirit and an attempt to cushion the devastating blow of a cancer diagnosis.
“The hope is really to be there for families when they’re at that rock bottom trauma moment, and remind them that room is theirs, and that space is theirs, and they have a job to do for their child,” Scott Kramer said. “You don’t control treatment, and you don’t control outcomes, but the one thing you do control is trying your best to help your kid still be a kid.”
Back to his haircut.
A couple of Fridays ago, Scott Kramer posted an “after” picture of his at-home do on his Instagram page with the hashtag #MyQuarantineCut. Friends and family chimed in with cheers and commiseration.
An idea was born.
The Kramers asked their friends and family and social media followers to share photos or videos of their at-home haircuts. They asked them to post them with the #MyQuarantineCut hashtag. For every post they saw, the Kramers would donate $10 to Dancing While Cancering.
“We just thought it was a cool way to take something everybody is doing anyway and put it to some good,” Pammy Kramer said.
So far they’ve counted 78 #MyQuarantineCut posts and donated $780 to the foundation.
“We’ve gotten everything from dogs to 12-year-old girls to people shaving lightning bolts into their heads,” Scott Kramer said.
Most of the participants have been family members and friends who email or text their pictures and videos to the Kramers, but they’re hoping to see the campaign catch on and spread beyond their existing circle of supporters.
“We didn’t want to ask for money from people at this time,” Scott Kramer said. “We just wanted to bring a smile to people and make it meaningful. The best part has been any time anyone sends us a photo or video, they’re smiling. So it’s doing what Maddie does best: joy and meaning, joy and meaning.”
At first, the Kramers’ foundation just provided the backpacks to families at Lurie Children’s Hospital of Chicago, where Maddie was treated. Now they partner with 15 hospitals in 10 states. Their mission feels more critical than ever, Pammy Kramer said, with coronavirus dramatically changing the way health care providers do their jobs and hospitals serve their patients.
“The rules have changed at a lot of hospitals we partner with, where only one parent is allowed now at the hospital,” she said. “Looking back at our experience, I can’t even imagine what that’s like for these families, and it speaks to how the need to bring joy is even greater than it was before.”
In many ways, the Kramers said, living through a pandemic is like living through childhood cancer.
“Parts of this are super reminiscent of what we went through with Maddie,” Pammy Kramer said. “When Maddie’s immune system was weak, which was pretty much the whole time she was in treatment, we oftentimes had to stay inside. We couldn’t see other people. We couldn’t see our friends or family. We had to wash our hands constantly. It was this heightened sense of awareness that this isn’t our normal life.”
Now, though, the Kramers are experiencing this strange life without a sick child. So they have more bandwidth, Pammy Kramer said, to look for ways to help others.
“All of our focus was on Maddie,” Pammy Kramer said. “And this time we’ve got Maddie in a different form, representing all the brave kids who are battling cancer right now through this crazy time. And it’s all about what we can do to help them. This time it’s more gratitude-filled.”
Scott Kramer said Maddie gave him an example to follow: Live in the moment.
“They’re a hell of a lot better at it than we are,” he said. “The way we process trauma as adults is, ‘What happened?’ and ‘What can happen?’ and ‘What’s this going to be in 30 days?’ and ‘What’s a year from now going to look like?’ And what do toddlers do? They play. If they feel good, they play. If they don’t, they don’t.”
And sometimes that’s what life calls for. Even when you’re a grown-up. Even if it’s temporary. Even if you have to pause and get back to the grueling and grim stuff.
And I guess that’s what I see when I look at #MyQuarantineCut. Glimmers of joy and fun and community finding a way to exist in and among the turmoil. And for a good cause, to boot.
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